KARACHI: “It is better to be blind than to suffer from obstetrical fistula,” says Razia, as she recalls the stigma and struggle of living with the condition for over a decade.
She is talking about the debilitating injury that affects women from low-income groups and makes life a living nightmare. Sustained during pregnancy or childbirth, the complication causes a hole to form between the birth canal and bladder, resulting in continuous, uncontrollable flow of urine and sometimes faeces.
Blind since childhood, Razia was married at the tender age of 14 and developed fistula soon afterwards. Years of crushing poverty and being shunned by family and friends meant that life for her was one battle after another — all because of a condition that could have been prevented, if not treated, much earlier.
Six months into her pregnancy, Razia's husband passed away. She had nowhere to go.
"I had no in-laws, and my own family abandoned me, repulsed by my disease and because they were fearful of contracting it themselves."
Her fistula made her pregnancy difficult: with no professional assistance available in Rahim Yar Khan, and no money to pay for help, her labour lasted for almost a week. The process of childbirth further aggravated her fistula, and she lost the baby.
Five months later, Razia travelled to Karachi to seek treatment. She had heard of the free-of-charge Koohi Goth Hospital in the city's Bin Qasim town. Here, she has been able to start life anew.
Ten years and seven surgeries later, Razia is re-married; settled in the city and also the happy mother of a healthy child. She is now 25 years old.
In one case of obstetric fistula — rectovaginal fistula — an abnormal connection between the large intestine and birth canal causes gas and stool to pass through the vagina.
In another sub-type, vesicovaginal fistula, the urinary tract and vagina are linked and there is continuous discharge of urine.
“When a passageway is formed between the bladder and the vagina, or the rectum and the vagina due to prolonged obstructed labour, a woman is unable to control urine, or faeces, or both,” explains Dr. Shershah Syed, a gynaecologist based in Karachi. The problem results in a foul odor that often makes people averse to coming near patients with fistula.
Dr Syed says husbands and family members often reject and abandon women with fistula because of the foul smell.
Razia has suffered both kinds of fistulas. She developed the first one when she was pregnant with her first child.
In cases like Razia’s, where the girl is young, fistula poses a greater risk because of poverty, malnutrition and the absence of maternal healthcare.
In small towns, where resources are scarce and proper sanitation is a luxury, children often develop stunting. Their skeleton and pelvis do not fully mature, which, in girls, can contribute to obstructed labour, as in the case of Razia. Her first child was stuck inside her for five days. She acknowledges the fact that, had she been able to get treatment at Koohi Goth Hospital at the time, her baby may have survived.
A refuge for the poor
Dr Shershah Syed established the Koohi Goth Hospital in 2007 to help poor women suffering from gynecological issues, particularly fistula. Since its inception, the hospital has attended to over four thousand patients.
Women, suffering from fistula, are treated free of charge. The hospital is a bustling center that can house at least 50 patients at a time. The institute also provides training. So far, 35 doctors have been trained to perform fistula surgery, and over 2,000 midwives have been taught to combat the condition.
Part of the reason for setting up the hospital was to provide better healthcare services to poor women. Dr Syed observes that obstetric fistula most commonly occurs among women living in poor segments of society. “By and large you do not witness fistula among upper or middle-class women,” says Dr Syed.
Redular physicians have little interest in treating fistula patients, since they are typically poor and cannot afford a doctor’s fees. In addition, in rural areas — where 69 per cent of Pakistan’s population resides — there is hardly any access to medical help in the first place, and women are forced to give birth without proper arrangements or sanitation.
When labour is obstructed, a woman is forced to endure excruciating pain for days before her baby finally dislodges. Razia’s labour lasted for five days, and due to mishandling by an untrained midwife, she developed complications that led to another fistula.
Her family was hardly supportive. Razia’s siblings and mother shunned her because of the faeces and urine leaking from her body. They found the smell "disgusting" and thought the condition was contagious.
Dr Syed says husbands and family members often reject and abandon women with fistula because of the foul smell. Aside from medical assistance, these women have virtually no financial or familial support.
For these women, the Koohi Goth Hospital is a refuge. It not only provides free treatment and better care than is available in rural centers, but also enables women to earn a livelihood through vocational training within its premises.
Poverty, malnutrition, a lack of sanitation
According to Dr Sajjad Ahmed Siddiqui, programme officer at Pakistan National Forum on Women’s Health, poorly performed abortions or caesarian sections can also lead to a kind of fistula known as iatrogenic fistula. This typically occurs during a surgery, when the bladder is accidentally cut. Due to malpractices and improper training of doctors, this is an increasing concern in Pakistan.
In developing countries like Pakistan, only a small section of women can afford the luxury of giving birth with the assistance of a trained professional. Most expectant women do not have midwives or doctors to treat them in case complications arise, and end up with disabling injuries like fistula, and even death.
Dr Shershah stresses on the importance of training midwives to battle fistula. He said that there is a need for at least 400,000 midwives across the country, but improved obstetric care in general and the proper use of C-sections to deliver babies surgically when needed can make a massive dent in preventing obstructed labour.
Dr Siddiqui says the government is yet to take concrete steps for the improvement and sustainability of the country's maternal health system. However, he says, responsible healthcare and trained professionals are only the first step — what we need is a change in our health policy, and our social mindsets.
Early marriages, for example, are to be blamed for fistulas. When a young girl is forced to bear a child, her under-developed body cannot always sustain the process. If there is no proper mechanism available to deliver the child, fistula can have devastating effects on both the mother and the newborn, explains Dr Syed.
“Short-statured girls are at a greater risk of developing fistulas and must be extra-cautious,” he says. Training midwives for delivery is of utmost importance, but must go hand in hand with spreading awareness among both men and women.
An expensive condition
The cost of treatment at private hospitals depends on the size and site of fistula. “It could range from Rs50,000 to Rs2,500,000,” says Dr Siddiqui.
Although her rectal fistula has finally been treated, Razia complains of complications in her urinary bladder and has to walk with urine bags permanently attached to her body. Two disposable bags — enough to last her a month — cost Rs1400, a luxury she cannot afford. At Koohi Goth, she can get these for free.
The hospital is making plans to expand its reach and resources, in order to help more impoverished women. These plans are being discussed with the United Nations Fund for Population, which already has nine hospitals working across the country, including in Peshawar, Quetta and Larkana.
A low chance of survival
According to Dr Syed, Razia’s story is nothing short of a miracle. Pakistan’s maternal mortality ranks at 276 per 100,000 live births, one of the highest reported by the World Health Organisation. In addition, fistula accounts for 6 per cent of maternal deaths globally. Though Europe and North America have virtually eradicated obstetric fistula due to improved obstetric care.
Given her age at the time of developing fistula, and complications during delivery, Razia’s chances of survival were low. Ten years and seven surgeries later, she is a healthy young woman whose body has been restored — for the most part — to its normal functions.
“She remarried in Karachi, and even though we told her husband that she could never conceive, he agreed [to go along] with it.” After the marriage, however, the husband wasn’t as accepting of her infertility. He subjected her to repeated physical violence, and threatened to remarry in order to have a child.
By a stroke of luck, Razia was given a chance to attend a fistula conference in Geneva, Switzerland. Soon after, she discovered she was pregnant — a case that is extremely rare, says Dr Syed.
“I have a two-month-old baby now,” says Razia. “And my husband has become gentler towards me.”
While life is more or less better for her, and most of her hardships are behind her, Razia still maintains that it is a hundred times better to be blind than to suffer from fistula.